Might run out of meds... can't breath from panic attacks

[Daisycat]

I do try to work out every day , but before this happened I’d wake up early and go before work since I knew after work I would be exhausted since my job does require a lot of physically activity. Now I have a hard time waking up early so I am not sure when to still work out. If it wasn’t hot outside I would take my dogs for a walk at night but until it cools down I can’t. I don’t hang out with friend’s really anymore because none of them know about this and I am not sure what to say when they ask me questions about why I am so depressed or why I stopped working on my specialty. It also makes me more depressed when I see them making plans for their future.

I am thankful for the few people I told, but I feel like I can’t really talk to them about how I feel and they just don’t get it. My mom believes all I need to do is pray and everything will be 100% better. I am not telling her this because I do not want the headache of it but I do not believe in God. My boyfriend is supportive but I know he doesn’t want to spend every day hearing about this. The one person I trusted at work 100% to tell was amazing and I was able to talk to them about how I felt all the time. This person ended up getting a very nice promotion and moved to a different city. I am very happy for him since I know it was what he had wanted , but it still is hard to lose someone I had who I could talk to. I don’t really feel comfortable telling anyone else. I think I mentioned I did tell my practice manager. It wasn’t really so I could talk to her about my feelings – more of a I need her to understand why my mood might be terrible some days and I might ask to have less interaction with people. I can usually fake it at work enough but some days I can’t.

I want to be the 1% that is misdiagnosed because if this ends up being something as simple as a B12 deficiency (which I was not tested for) I will feel like I am being given a second chance. I won’t have to think about injecting myself or waiting on getting my new piercing because the MRI would rip it out or flying somewhere and the airline loses my medicine.


I think my Dr. Google habit makes things worse but I am addicted even though I know how bad it is.

A broken arm to me is not as embarrassing as MS is. And as for cancer it would depend on the stage it was when I found it. Stage 4 I would not put myself through Chemo for a small chance of survival. If this lump in my breast does end up being cancer I am not sure what I will do since hospitals give me panic attacks now. I am having to have someone drive me to my testing tomorrow just because I can’t handle going alone.

I don’t think I could ever just let people know I have MS. I would feel ashamed and like they were judging everything I did. I would also assume it would prevent me from any promotion at work. I know that’s illegal but you have to be able to prove it. I don’t think I will ever get to the point to where I can tell people and not feel ashamed (even if I do get to the point of accepting it)

[pennstater]

I didn’t know about that test. If my attempt to find something else as the cause of my issue last year fails I might look into that. I don’t get why these people are admitting to people they have this... are these people you know. I guess I’m mostly confused how it comes up in conversation. And I am depressed but for me the thought of accepting that I have this curse is more dewpressing. It’ll be like I have finally given up on everything. As long as I have that 1% hope it’s something else I have reasons to keep going. I miss my old life, but I know that’s gone. Even if this somehow turns out to be something else there’s no way I could go back to how I used to be.

Hi daisycat,

How true. Once diagnosed with MS or something else, it is hard to go back to how you used to be. Even fully recovered, emotionally it changes us.
But that doesn't mean that you can't go back to doing things you enjoyed, working out, and hanging with friends.

You are young. What defines your life at 25 may be different than 35, than 45, etc.. And this is true regardless of MS or disease free. We constantly adapt to life and priorities change.

As for how it comes up, with close friends I told when they knew I was different, not joining them or if I did, distracted. They kept my secret and stood by me.

Work, I only told when I needed to. Even then, the people I told kept my confidence. Because I kept doing my job the way I always did, it was not an issue between us. If anything, they would tell me not too push myself so hard.

Accepting you have some chronic illness is not giving up on life. It is how you respond to the diagnosis that will determine if you are giving up on life. Right now, you appear to have no desire to fight for your life. I truly hope that you find strength and can fight. You have so much of life ahead of you.

Can I ask one question. Why is it you are so determined to be the 1% that was misdiagnised, but that you can't use that same determination and work as hard as you can to be in the % of MS patients who don't progress?

A recent NARCOMs study showed that the proportion of those who recorded need for at least bilateral assistance to walk increased from 5% at year 0 to 13% at year 10 to 52% at year 45. This means with the average age at diagnosis 30, only 52% needed a walker or bilateral crutches at the age of 75! Likewise, 25% of MS patients reported they could still work a full day after 45 years with MS. The other thing to understand that on average, it took 7 years from onset to diagnosis. Meaning these stats will keep getting better due to earlier time to diagnosis and earlier start of disease modifying therapies, most of which are more effective that the early drugs.

When you have your follow up with an MS specialist and if they conclude MS after more testing, ask them about prognosis and latest disability stats. Your odds are better at living the life you want than they are of being misdiagnosed.

[msgijo]

... I don’t get why these people are admitting to people they have this... are these people you know. I guess I’m mostly confused how it comes up in conversation... "

Let's say that you were walking to your vehicle and slipped and fell. You broke your arm in the fall. Would you explain the cast on your arm by declaring declaring that doctors don't know what they are talking about? Or would you say that it was your fault for being clumsy enough to fall and break your arm (ie something that you caused to happen)?

Well MS is not something that you caused. It is more like developing cancer. Would you ignore that too? Your life would be just as "ruined" with cancer. Or would you let others know what was going on with you then?

I let others know that I have MS because they knew something was wrong anyhow. Rather than have them wonder and come up with wrong conclusions I cleared the air by telling them. I used it in teaching because of the examples that I was able use in making certain points.

I NEVER felt that I was unworthy to do anything because of MS. And since there is nothing that I did to cause it I have never felt "ashamed". If anything I am proud of all that I have accomplished in spite of having MS.

I don't meet someone and start the conversation with "Hey I have MS", but I don't shy away from talking about it either. My family knew as soon as I did (of course) and the younger people in my family have never known me any other way. But it doesn't change things for them - to them I am "normal". To them it is kinda like if everyone in the family had brown eyes and mine were blue. The older family members (including my younger brothers) tend to forget that I have MS. It does still pop up sometimes, but not as the central point of ME (the blue eyed thing again).

In other words for me it is simply not that big a deal. The sky is blue and the grass is green and I have MS. All are just facts.

Even if this somehow turns out to be something else there’s no way I could go back to how I used to be.

Finally the beginnings of acceptance. Well done .

[gargantua]

I didn’t know about that test. If my attempt to find something else as the cause of my issue last year fails I might look into that. I don’t get why these people are admitting to people they have this... are these people you know. I guess I’m mostly confused how it comes up in conversation. And I am depressed but for me the thought of accepting that I have this curse is more depressing. It’ll be like I have finally given up on everything. As long as I have that 1% hope it’s something else I have reasons to keep going. I miss my old life, but I know that’s gone. Even if this somehow turns out to be something else there’s no way I could go back to how I used to be.

I apologize for saying you should not post anything like the above. That was wrong - free speech is important. But I stand by other parts of my previous response in that people are here to support you and I think an apology and thanks are in order at this point.

All the best, G

[gargantua]

I don’t get why these people are admitting to people they have this... are these people you know...And I am depressed but for me the thought of accepting that I have this curse is more depressing. It’ll be like I have finally given up on everything.

Daisy, you need to stop trolling with terms like "this curse" and speaking about people with MS like they are pariahs. You are starting to sound like someone who believes handicapped people have no place in society. And that sentiment is extremely distressing for most folks reading these forums. Hence the word, "trolling." Please take heed moderators.

People have offered suggestions of exercise, support groups, and spent so much time providing impassioned examples of how their lives have been fulfilling despite having MS. I just thought of one other thing that makes chronically ill people feel better: Gratitude. One example of gratitude would be - even in just one response - to say Thank You.

And not one more post like the above. Not one.

[Daisycat]

I didn’t know about that test. If my attempt to find something else as the cause of my issue last year fails I might look into that. I don’t get why these people are admitting to people they have this... are these people you know. I guess I’m mostly confused how it comes up in conversation. And I am depressed but for me the thought of accepting that I have this curse is more depressing. It’ll be like I have finally given up on everything. As long as I have that 1% hope it’s something else I have reasons to keep going. I miss my old life, but I know that’s gone. Even if this somehow turns out to be something else there’s no way I could go back to how I used to be.

[pennstater]

Not everyone has cognitive issues. You can get neuropsychological testing to give you a baseline. You can get retested over time. They can tell you if any deficits, and if so, are they normal for your age. That would alleviate your fears of whether you should be caring for animals.

As an FYI, there are people with MS in all professions. I met a surgeon who continued to operate. He eventually had to limit to short general surgeries for fatigue reasons. He has since retired, at the age of 68.

Just because a disease has a potential symptom doesn't mean you will get it. If someone in your field had low blood pressure, I wouldn't expect them to quit because they could pass out. If someone had high blood pressure, I wouldn't expect them to quit because they could have a heart attack or stroke. Only if uncontrolled and symptomatic would I expect them to leave my dog to someone else.

Your negative attitude, inability to accept any help or suggestions, and stress will limit you more than MS at this point. You admit to depression but won't seek help. You are choosing to stay stuck. I hope one day, you move forward. Everyone deserves to find peace in life.

[Daisycat]

Owning my own = making choices about how things are handled. Having to only volunteer because of my curse = a constant reminder of my short comings. And that makes sense about why you told coworkers I guess. I would have had to come up with a lie but since I’ll never spend another night in a hospital because of this I won’t have to think of one. To me it is shameful to have this. It’s basically admitting my brain doesn’t work right and it’ll make people question if I’ll be competent enough to take care of my patients. If something did happen and it ever got out that I’m cursed I could see a huge lawsuit from an owner because the company allowed someone with a possible mental disability to take care of their animal unsupervised. And the day I’m told I need a baby sitter at work is the day I sue for discrimination and file for long term disability.

[pennstater]

Yes it would be 100% less meaningful to volunteer at one since my goal was to retire one day and own a dog rescue. Volunteering at one just is not the same.

And I am not going to ever adjust to living with this curse. I will find out a way to prove I was misdiagnosed and sue the hospital fir millions for destroying my life. And no I do not need help… accepting that my brain is rotting and that I have no future is something I WILL NOT do.
And as for your quotes…. I don’t think life knows how to show love if making someone think they have this curse Is how it shows love.


And if I can ask why did you tell people you work with about this? I am so ashamed about this curse that I would have to quit my job if people found out.

I would have thought the goal was to shelter and rescue animals. My bad.

I told a few ciworkers when I worked thru a flare, and from steroids, my face was bright red. Two people guessed as they had friends and family members with MS and knew the "steroid flush". I told more people when I needed to modify my schedule for infusions every 28 days. I was fortunate - noone treated me differently and my job was not in jeopardy. Most respected my work ethic. Of course, I didn't feel ashamed as there was nothing to be ashamed about. Sad you feel there is.

[Daisycat]

Yes it would be 100% less meaningful to volunteer at one since my goal was to retire one day and own a dog rescue. Volunteering at one just is not the same.

And I am not going to ever adjust to living with this curse. I will find out a way to prove I was misdiagnosed and sue the hospital fir millions for destroying my life. And no I do not need help… accepting that my brain is rotting and that I have no future is something I WILL NOT do.
And as for your quotes…. I don’t think life knows how to show love if making someone think they have this curse Is how it shows love.


And if I can ask why did you tell people you work with about this? I am so ashamed about this curse that I would have to quit my job if people found out.

[gargantua]

Dennis P. Kimbro:. "Life is 10% what happens to us and 90% how we react to it."

Great 1! THANK YOU.

[msgijo]

Daisycat - I don't watch TV, and have trouble sleeping (overactive Thyroids) AND I am too busy to lay around feeling sorry for myself anyhow. My husband requires help with everything - I have to help him dress, prepare food for him, do the bills and read the mail (the stroke took away 1/2 his eyesight and some cognitive function) and even put his medicines in weekly dosage boxes - and watch to ensure that he takes his insulin as he is supposed to.

All of my animals are 'rescues' except for the chickens. At one point I bred dogs (min pins and shelties) but lost too much money on that to keep it up (I guess that I wanted to 'spoil' them too much ).

There are other things that I do (volunteer work) but I am not suggesting that you follow in everything that occupies me. I posted all that I do after almost 30 years with MS to let you know that this IS NOT a death sentence. Yeah I have had to make some modifications, but not too many.

I will also tell you that right after I bought my home was when I was dx'ed with MS. I was going thru a divorce and raising my 3 children AND working full time and going to school at that time. Yes i was devastated, and to be honest I kinda gave up (for about a year). I love the outside (flowers and trees) but I refused to purchase anything for my new home for fear that I wouldn't be able to take care of it "some day". I was the same way with animals - I was afraid that I couldn't care for them "some day". All that I did then was work and care for my children.

That was a pitiful life, and I finally realized that I did not want to exist without some of the things that I wanted in my life. THAT was when I started living again, and haven't stopped yet!
IMHO - you will be VERY disappointed in 30ish years when you realize that you threw your life away because of fears about "what ifs" that never happened.

I believe that everyone on this forum has had a similar story, and it is encouraging to see that most are still doing great. Yeah some of us are slowing down, but we are much older and so it could be from aging and NOT MS.

Oh - I didn't try to hide my MS from the people that I worked with - in fact I used it when teaching (not my job, but an additional duty that I took on). I only had 1 person that had a negative reaction about it.

I can't convince you that you are worth the effort, but I could not let you think that your reasoning was based on facts (as even you allude to - "...IF I'm even mildly disabled ..."). Talk to a professional. They will be able to help you in the way that all of us here want to but aren't trained to do. Good luck.

[pennstater]

I don’t have anything without my job. I don’t have kids (never wanted them) and all my hobbies include things this disease will take from me. Saving up to open my animal rescue and actually working there when I was old was my dream. If I’m even mildly disabled it won’t happen. And I’ll be a lot less disappointed if I just give up now than I would be in 30ish years when I was about to retire and had my dreams crushed or if I lose my job in 2 years. As much as I love watching Netflix and sleeping doing that for the next how ever many years I’d live would get old.

Ok, so say you can't own your own shelter, which BTW is a very admirable goal, you can volunteer at another. Would it be any less meaningful?

You keep posting the same message to anyone who tries to help. Why? If you are trying to convince us that your vision is what MS is, forget it. We have lived with it and adjusted to it when needed.

Is it fair that anyone has it, no. Does it upset us at times, indulge in self-pity, make us fearful, or angry, of course. But from experience we have learned we can't stay in any if those places too long. The first year following diagnosis is a brutal roller coaster ride. But if you aren't starting to manage those emotions and come to acceptance, you need help.

Our combined experience on this board seems to be meaningless to you. I keep a journal of quotes that I take out when I need some help. Since our words are not helping, maybe someone else's will. The first quote is a personal favorite.

Dennis P. Kimbro:. "Life is 10% what happens to us and 90% how we react to it."

Oprah Winfrey - "You get in life what you have the courage to ask for."

Arthur Rubinstein - " I have found that if you love life, life will love you back."

H.T. Leslie - "The game of life is not so much in holding a good hand as playing a poor hand well."

Abraham Lincoln - "In the end, it's not the years in your life that count. It's the life in your years."

[Daisycat]

I don’t have anything without my job. I don’t have kids (never wanted them) and all my hobbies include things this disease will take from me. Saving up to open my animal rescue and actually working there when I was old was my dream. If I’m even mildly disabled it won’t happen. And I’ll be a lot less disappointed if I just give up now than I would be in 30ish years when I was about to retire and had my dreams crushed or if I lose my job in 2 years. As much as I love watching Netflix and sleeping doing that for the next how ever many years I’d live would get old.

[msgijo]

Daisycat - I have read your posts (all of them) and while you appear to be going through what ALL of us here have been through, you are just stuck!

I was dx'ed in 1995. I'll do the math for you - 23 years ago. I started having problems with no answers in 1990, so if you want to go from that date I have lived with this for 28 years. Since then I have raised 3 children, bought a house and 2 cars (well I am paying on a new one now that I got 2 weeks ago). I still walk unaided (most days) drive unassisted (have to do all driving now since husband's stroke) take care of ALL house and yard chores and am caretaker of not only myself but my husband also. I have 7 dogs, 2 cats and 16 chickens that I take care of daily to include hauling 50 pound bags of feed. I also have a beautiful granddaughter that loves to come out and stay with her 'silly grandma'.

Yes I DID lose a job that I loved because of MS - after 18 years, but I have found that my life is actually better now than trying to balance work and things that I want to do.

Bottom line is that it is YOUR CHOICE. You decide if you want to be stuck where you are or if you want to take some of the suggestions that have been given to you.

Wishing the best for you, but as I said it is your choice.